In a step towards inclusive research practices, The Brain Tumour Charity funded study, the COBra study, finds success thanks to the indispensable efforts of Patient and Public Involvement (PPI) Research Partners.
The COBra study was a multi-stage project that aimed to develop a core outcome set for brain tumour trials. A core outcome set is a list of key outcomes (e.g. quality of life, pain, nausea, etc) that have been decided upon and agreed for a specific health condition as being critically important to measure in research trials/clinical practice. The COBra study in particular also focused on those outcomes that were patient reportable.
The COBra study sets a new standard by recognising the transformative power of PPI from the study’s very inception. Two dedicated PPI partners, initially contributors to the COBra’s design and grant application, evolved into indispensable members of the core research team throughout the study and continue to do this in the ongoing reporting of the study findings.
The partnership extended far beyond conventional roles, with PPI champions actively participating in regular bi-monthly meetings, shaping research methodologies, and contributing to various crucial aspects of the study. Their influence spanned protocol and patient-facing document reviews, strategic recruitment discussions, and providing invaluable insights to overcome challenges in recruitment.
The COBra study also utilised the Patient and Public Involvement in Research Impact Tracking (PIRIT) toolkit. One of the PPI representatives, Dr Kathy Seddon, was part of the WCRC design team that created PIRIT. The toolkit is based on the UK Standards for Public Involvement which are guidelines designed to help improve the quality and consistency of public involvement in research. Both the PIRIT planning and tracking tools were used during the study, by researchers and the involved public, to review existing involvement plans and activity and track its impact against the standards. Using PIRIT helped to prompt discussions on increasing the different levels and types of involvement opportunities available, leading to the recruitment of five more members of the public to help develop and test the survey and share their views on improvements.
Elin Baddeley, Research Associate on the COBra study said: “PPI Research Partners played a key role in co-producing comprehensive documentation; this highlights the far-reaching impact of PPI activities, setting a precedent for a comprehensive impact assessment in our research.”
The PPI team’s impact is also evident in the second phase of the study, where patient surveys were critical. PPI Research Partners, collaborated and gave additional perspectives that refined survey materials, ensuring clarity in language and format. This resulted in increased participation rates and minimal challenges reported by participants.
WCRC PPI Research Partner Kathy Seddon said: “Being part of the PPI team in COBra and seeing the PIRIT in action was a great experience. It felt important to be able to offer my lived experience of brain tumours to help the COBra researchers. They are to be commended for their determination to use PPI to the benefit of their research with outstanding results.“
The involvement of the PPI Research Partners goes beyond shaping methodologies; they actively supported the initial interview analysis process by providing valuable insights that helped to refine and contextualise emerging themes. Their enduring support extended to facilitating ongoing recruitment efforts and aiding in the effective dissemination of findings through conference abstracts, presentations, and published journal articles.
The COBra study stands as a beacon of collaborative excellence, emphasising the pivotal role PPI plays in shaping the future of research and the extraordinary outcomes achievable through a patient-centric and inclusive research paradigm.